Volunteering for Advocating Success for Kids (ASK)!
By Ashley Bobo
Exactly What IS Autism?
To be completely honest, when I was first called to be accepted to volunteer with the Advocating Success for Kids Program, I didn't know the first thing about autism. Like most Americans, it was just something that I had heard about but never really seen before. Autism is an often misunderstood severe developmental disorder, and on the whirlwind first day of my summer internship I realized I had made a gratifying decision to try and gain a deep understanding of this uniquely pervasive disorder.
Surprisingly, not only do we not know the exact cause of a disorder that affects 9 out of 1000 American children, but even the task of diagnosing autism is a difficult one without distinct guidelines for clinicians. For most medical clinics, autism is only marginally understood through the common theme of social isolation that occurred among its patients. But what the families afflicted by cases of autism need most in this time of uncertainty is a support system to get them through the difficulties that come along with the disorder. This is exactly what ASK is. The Advocating Success for Kids Program (ASK) at Boston Children's hospital is an innovative program dedicated to providing support and quick diagnosis to children suffering from autism. The multidisciplinary health care team is made up of developmental pediatricians, psychologists, and social workers; a group dynamic that allowed someone like me to explore many different realms of health care. If you know you’re interested in health or psychiatry, ASK is the perfect way to figure out what part of medicine you like best. As a member of ASK, I got to not only work hard but play hard too. From shadowing the physicians at each appointment to playing Red Light- Green Light with the kids, I got to experience every aspect of dealing with a child that has autism and see what it’s like to be an efficient health care provider that looks beyond the disorder and focuses on every need the child has; whether that be prescribing medication, helping them acquire stronger reading skills, or encouraging them to make a new friends in the classroom.
A Typical Day with ASK
The Boston Children’s Hospital exudes colors and love the minute you walk in the door. The entrance opens up into a huge foyer with large ceilings, colorful art exhibits, adorable children everywhere, and even an Au Bon Pain that smells like cinnamon. As I enter the clinic where we work, my team is busy prepping for the morning rush of patients, sifting through paperwork and asking each other about their weekends. This part of the day is a whirlwind as patients check in and I get ready to go in with my first patient of the day. With my paperwork in hand, I head into the waiting room to get my first patient who I find scribbling away on a scrap piece of paper, attempting to draw a tiger. “RAWR!” the 5 year old says as he shoves the paper up in the air and lifts onto his tippy toes, parading the paper around the room but never coming over to show it to me. At first this type of behavior would just seem like that of a typical child, but after working in ASK for the past couple of weeks, I know differently. I instantly recognize this discreet sign that the child has no interest to share his artwork with me as a rift in his social interaction skills. I smile as I introduce myself to the family, secretly pleased at my ability to hold a conversation in Spanish. My favorite cases are always the one’s where the family’s first language is Spanish because it gives me an opportunity to practice. We head into the room with the doctor and the appointment begins.
While all the toys in the room seem like fun to the child, they are really all tests of his abilities to interact with the doctor and have organized play. Usually children with autism display a lack of organized play, focus on specific parts of a toy like the wheels instead of the whole car, show disinterests in interacting with others in the room, and even have delayed speech development. These type of symptoms however are just the tip of the iceberg and unfortunately for the fourth time since my time in ASK, we diagnose him with Autism Spectrum Disorder. Undoubtedly, the most frustrating part of my experience is watching the diagnosis of autism. Because of its pervasive nature, diagnosis models simply group symptoms of autism into one big inconclusive batch. Being diagnosed with Autism Spectrum Disorder is almost like going to the doctor with a cough, a stomach ache, a sore throat and back pain, only to have them tell they don’t really know what’s wrong, and only know that you’re sick. Leaving the room, I express my frustrations to the lead doctor. She patiently responds that even if we can’t give a definitive answer or diagnosis, we can still be a reliable support for the family. That’s the best part about ASK. It shows you that being a doctor is not just about the medical side of health care. Through ASK, the children and families get support in every aspect of their lives, whether it’s getting the child into an appropriate special education program in school or helping them make friends through one of the ASK parent support groups. The ASK parent support groups is undoubtedly the most fun part of the day. While the parents get support from other parents that have children with autism, we get to do so many fun things with the kids. Today it’s reading Stone Soup and playing Simon Says, but next week we’ll color and play basketball. It’s during these support groups that you really see how strongly the kid’s desires are to be just like the other kids they see and make new friends. I can’t help but smile as I realize I’m helping to give them a special gift to be a part of something they don’t normally get to experience.
A Lasting Impact
Though at times, it can seem like the work we do in ASK is small, the impact that it has on the lives of these families is undeniable. ASK is a program that statewide is ahead of the curve for routine developmental and autism screening, is co-located early diagnostic specialty service, and is advanced in procuring coordinated care. In my final weeks there, ASK has been invited to participate in policy making not only for Boston Children’s Hospital but also for the “Thrive in Five” ready systems working group and MassHealth group. Because of this, I also got to participate in ASK’s first attempt to collect consolidated research on autism and the significance of the impact that services such as ASK can provide for children with developmental disorders. This gave me my first chance to see what conducting a research experiment is like, work with a team of psychiatrist and education specialists, and learn how to write up an IRB grant proposal. Being a part of ASK afforded me an opportunity to not only have fun working with kids but to also gain invaluable experience into the world of being a clinical physician and research.
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